Breathlessness despite optimal pathophysiological treatment: on the relevance of being chronic

From the author:

Morélot-Panzini and colleagues response to the paper by Johnson et al. [1] is an important contribution to the debate about the chronic breathlessness syndrome, which I called for in my editorial [2] and to which others have already contributed [3, 4]. English is a greedy language using words that mean the same in their original tongue to denote slight differences in meaning in English. In this case, dyspnoea is the technical term for breathlessness. In 40 years of clinical practice I never met a patient who complained of dyspnoea but saw many who were greatly affected by what they called breathlessness. This distinction between the symptom and its impact are at the heart of the discussions around the chronic breathlessness syndrome. I strongly support the need to provide more holistic care that looks at the consequences of breathlessness as well as their causes. However, important secondary effects on mood, behaviour and lifestyle occur in many chronic conditions not fully controlled by medical-management strategies. Should we refer to chronic arthritis syndrome or chronic cluster headache syndrome or any of the numerous other examples which readily suggest themselves? Whether or not we use the word syndrome these patients need better care than they currently receive.

Morélot-Panzini and colleagues make a cogent case for substituting the word “persistent” for “chronic” as it fits better with the problems they have identified in acute care. However, we should be cautious about making one term suit the needs of all circumstances. The clinical and societal impact of breathlessness is likely to be quite different for the patient in the intensive care unit needing ventilatory support after an acute illness and the patient with idiopathic hyperventilation who is an ambulatory outpatient. Making “one size fit all” will be a difficult task.

The major challenge ahead is not just to select the correct words (semantic arguments are of great interest to specialists but seldom advance the cause of patients) but instead to decide on the needs of patients with breathlessness and how best to meet them. If we focus on doing this then I suspect we will find the most appropriate words to describe those we are trying to help.